There is no map to follow when living with chronic illness. The roads, the very landscape, can change from day to day, week to week. This ever-changing landscape is what makes living with chronic illness an adventure, but what also leads so many of us to feeling lost, lonely, depressed.
For many of us, this unpredictable journey means never being able to fully commit to social gatherings and the unintended distancing of ourselves from friends and family as we figure out how to navigate these roads not yet traveled. At the same time, we cope with the myriad things our illnesses throw at us on a daily, if not hourly basis. It means needing to say no when we want to say yes. It means anyone who hasn't seen us for a week or a month might run into a completely differently functioning person - for the worse or for the better. Our health can go downhill quickly, or can turn around overnight. What is true for our limitations one month may be completely out the window the next.
Having such a lack of stability in life is a major cause of depression and anxiety in people living with chronic illness, as we feel like we're more wandering through life than living it, or worse yet, heading for a goal only to have it continually ripped from our grasp. In addition, it's difficult for those around us to understand the ups and downs of our health. Strangely enough, it's often when we're at our healthiest that it's the most difficult, as loved ones are used to perceiving our limitations and are unaccustomed to the healthy version of ourselves.
At my most recent rheumatologist appointment I mentioned my issues with my neck and hands. Carpal tunnel, he said after a couple tests. And inflammation due to psoriatic arthritis / spondylitis in my neck and shoulders. After increasing the frequency of my infusions from every 8 to every 6 weeks at my last appointment, he upped my dosage this time. Hopefully this will do it. Hopefully I won't have increased side effects. It does mean change. Again.
Frankly, I'm tired. Tired of dealing with an unpredictable body. Tired of being exhausted. Tired of brain fog. Tired of the effects all of this has on those around me. Tired of not being understood.
Don't get me wrong - my quality of life has vastly improved since going on Remicade. I'm able to function incredibly well most days. I think it's that I'm getting a taste of what normal-for-me life could be, and I merely want to get there. And just when I see normal just around the bend, a mountain of PsA issues pops up in between me and my destination and I need to make a side-trip to the ER, to the land of Prednisone, taking me way off course, and farther away from stable, from normal. I feel lost, and depressed, and as if my perception of life is once again out of whack. I know I need to find a new road toward wellness, and realize I need to address wellness in every area of my life.
I'm opening doors and windows. I'm letting the sunshine in. I'm getting rid of things in life that I don't need and welcoming new opportunities for growth. I'm adjusting my expectations moving forward a day at a time, an hour at a time, or a minute at a time if need be. I thank God every day for the friends I have who, even if they don't understand my illness, understand my illness is not me, and for family and friends who support me and whom I can support when they need it. I find peace in this circle that is life - where I can open myself to receiving what is needed and feels right as I give what I can and what feels right. I am learning to value the downs as much as the ups and to look for the message in my depression and anxiety, as growth happens perhaps more in these valleys of life than at its summits.
When I find myself growing road-weary, I take stock of where I've been and what I've learned. I look at how far I've come. I lean on family and friends, who help me find balance. I pray to God to guide my path toward wholeness and wellness, whatever that landscape may look like in my life. And I realize that sometimes it's on the bumpiest roads that we really find out what we're made of.